New to the group

[Sue]

Hi Johnson,

I also extend a warm welcome to the forum and I'm glad you found this place early on.  These are great people who are more than willing to hand out great information and wonderful support to all who enter here. This is a dastardly thing that has happened to us all, and we've all been through the disbelief, confusion, anger and sadness at our diagnosis. That's certainly normal! It's been a little over a year since my treatment for my AN, and I still sometimes can't understand why I would get such a strange thing like this.  But, we learn, we cope, we get our treatment, we move on with our life.  We have learned that we have a "new normal" for us now and that there is something each of us has to learn to live with - single sided deafness, or partial deafness, varying degrees of tinnitus, to name two of the most common. Some of us are further along in the journey than others, but we are all learning together, I think.  I wish you the very best in your treatment and recovery.

Sue in Vancouver USA

[Windsong]

What Bruce says here is so true. There is so much offered on this site and it helps in so many ways....

Also I am beginning to see so many others diganosed after a bewildering time with symptoms. When I think of the times i went to the Er and even one time when i insisted i had a lump in head and it wasn't followed up on... one time after a ct scan I could see this doc looking at the scan on the screen and i saw him lean fwd all of a sudden staring at it  and i thought aha he's found it but then he sat back and relaxed and came over and told me all was fine. In the end, I ran off to a neuro and said well if not's what i think then it has to be ms ? But my neurotologist had also ordered an mri. Truly anger doesn't help. Our enrgy needs to be placed on dealing with it. There is a bit of irony for me too. In the year before An was found i got a couple of other diagnoses which made surgery for me more problematic in that my risks went up, so in a way, it was  one of those blessings in disguise maybe.

Wishing you all the best too (as for all the other new aners posting recently.... )

W.

[Crazycat]

Hi John!

    Nice to see that you found the forum. I didn't find it until two months after my surgery. Great place to obtain information and consolation.

I am a musician as well.
   Have you had any dizziness or lightheadedness along with the tinnitus? How about double vision? Chances are that the growth at 3cm has not grown big enough yet to wreak that much havoc.
   You'll get though it all. Just try to find the most experienced doctors in this area and keep in mind that it is NOT cancerous. Hope to talk with you later.........it is now 3:40 am!

            Paul

[johnsli]

Heh guys,

I have found over the last 24 hours, encouragement, friendship, and hope.  You guys are so uplifting.  The only problem right now that I have is shouting pains up the back of my neck.  Kind of like a migraine, but, sudden, coming and going.  They have usually gone away, but, this time they aren't going away.  Any suggestions besides IBP, and heating pad.  Doctor has said that they are stress related, but, I have had them off and on for over a year.  ENT said not related to the ear problem, but, it is hard to believe any doctor right now. Any help

Laura

[ppearl214]

Laura, I cannot answer re: your pain but maybe, since it's on the back of your neck, I'm sure stress may be a contributing factor.....

Hang in there!

Phyl

[Shrnwldr]

Hello Johnson and Welcome to this site.

When first diagnosed I felt like you did.  But I found this wonderful site.  I couldn't tell you anymore or any less than anyone else on here.  I can only reiterate what everyone is saying by telling you to talk to as many doctors as you feel necessary.  Make sure above all that whichever doctors you talk to are "experts" in this field.  Meaning they have experience experience experience. 

To help with travel many will accept your MRI films and call you for a consult. 

Remember one thing that kinda gets me through all this.....  God would not give you anymore than he thinks you can handle or your family for that matter.  It sounds like you have a great support group already and that is one very important key to a successful outcome. The most important of course is attitude.

I will keep praying for you and your family to have the courage to complete this journey together. Bless this board for keeping an otherwise insane issue real.....

[Dealy]

Dear Johnson: I am going too give you a different perspective than the other's. I am on my 2nd go around. Had 1.5CM back in 1988-surgery which left me deaf in left ear. In 2005 they found one in my right ear-this one is 2.4CM. Well if I had surgery that would leave me totally deaf. So I opted for FSR Radiation at Johns Hopkins this Past summer. I am now about 9 months out. My recent 9 month MRI shows swelling-which is good and previous scans showed necrosis-which means tumor is dying-also good. However my hearing is so bad now that one sided hearing was actually a gift. Anyway- I found through the years that your biggest supporters are sometimes your least. Example- I told one of my sisters that I may go totally deaf-she says " Oh well-if you do you do". My sister in-law last Xmas told me I need to get out more. So it has become a joke with my wife and I that my problem is that I do not get out enough even though I work a 40 hour job and by the time I get home at 6PM I am exhausted and ready for bed. Huh-at 6PM. You betcha-I get up at 5AM and my body needs rest. Sleep is the healer of the body. Anyway-I feel we are in a quick fix society. So much so that people give you a certain time too adjust and that's it. It just does not work that way. That is why I like this group because people here care and understand. I consider these people my family even though I do not know all of them personally. I am off of my soap box-so Best Wishes-Take a deep breath and stay with us on this forum. You will surviive and manage-Trust  and Patience. Thanks-Ron

[Pembo]

Welcome to our elite club!    I had a 4 cm tumor removed almost 3 years ago and I think that the most stressful times were before the surgery, so what you are feeling is normal. Stay strong, do your research and things will get better. As for the neck stuff, have you tried medical massage? It might help. I go to a guy locally and it's only $35/30  mins and well worth it.

Good luck to you....

[Windsong]

Hi Laura,

Well stress can make the neck stiff and cause pain, and then there are other reasons too. I was told my neck pain was not caused by the An also, and since i do try to practice stress relief things but the pain would or could still be there and I had some intuitive thoughts about my spine, i asked for a spinal mri. It came back with a number of things found. A benign tumour for which nothing is done really, not supposed to be a problem, some spinal cord compression in various places including the neck, and a few other never-before-heard- of- big-medical-names, along with the general stuff that can show up in a spine due to "old age" haha.

I don't know your history but in mine a few rear enders from some not-paying-attention-drivers gave me a few whiplashes which did contribute to the neck/ back issues.

This may have nothing to do with your neck pains but i thought i'd pass it on as a possibility....

Hope you find out what yours is from and can get some useful way of coping. I never could use heat warming pads on my neck all that much for relief. Sometimes a hot shower on that area has helped. Plus your run of the mill pain management pills etc. but truly giving my neck a rest and lying down helps the best though that can be a boring thing to do.

Ron, that line "get out more  (or enough) " IS pretty funny.... haha.., of course i'd feel better gallivanting around haha i really ddon't think i have an An either.... 

quick fix? probaby the mantra of modern society...

Cheers,
W.

[Crazycat]

Laura (sorry for calling you John!),

     Neckaches are very common for people in our condition (ask Joef!) When I had the tumor, I was plagued with a sore neck, radiating from the base of the back of the skull. If you will feel the back of your skull at the base, you will feel that there are two points - almost like nubs - one on each side. I would always be pressing on them and wondering why they were such painful pressure points. I thought that I had a neck subluxation, causing neck-aches, double vision and lightheadedness. I sought chiropractic care - to no avail. I'd describe my symptoms to the chiropractors - yes, more than one - and they'd give me a very grave and concerned look, asking, "Have you had this checked out medically?"  A chiropractic solution is an example of wishful thinking. Earlier on, someone said to me, all-knowing and matter-of-factly, "Oh, it's a virus". The better part of you wants to believe these things. I remember asking one of my friends what he made of my symptoms, the double vision in particular. Without missing a beat, he blurted out "Brain tumor". He was right and I knew it, I just couldn't bring myself to admit it. However, I knew - somehow - that whatever was wrong with me was not cancerous.

   Well, off to another dinner party!   Take care,   Paul

[Windsong]

HI Crazycat,

I am really glad to see you write this above as I've had a hard believing that the An is not responsible for some of my neck pain.

There are different kinds of pain and one of mine defintiely seems to come on at same time as some weird head stuff. I figure something in the head is messing with the neck in that area you mentioned.

Sure some real neck things can cause symptoms in neck but i bet the An is having an ipact on mine simply from reading what others have said here too.....

Thanks.
W.
PS enjoy that dinner party!

[johnsli]

Thanks everybody, I've had these pains since my ear problems started.  It is just more frequent now than before.  I tried to relax today, and the headache and neck pain has seemed to be less severe.  I'm not going to a dinner party, but, I am a great cook, and just finished cleaning up after a great dinner.  Honey BBQ Garlic chicken,  Fresh broccoli and a nice salad.
YUMMMIE
Maybe I could through a nice dinner party after I get this mess done. HAHAHA

[Obita]

Someone told me (I cannot remember which doctor, nurse, chiropractor etc...) that the neck pain could be caused by the vestibular nerve being compromised by the AN.  We would never even notice that our brain and good side nerve are trying to compensate for the loss and or misfiring of the AN side.  Unconsiously, to stay upright, we are using muscles in a way we never had before. 

I had my hips replaced shortly after my AN surgery.  I had annoying back pain for years before my first total hip.  Severe pain after the first replacement and zero back pain after the second.  My load was balanced again, so no back pain.

It sounds like a good theory but I really don't know if it is true.  Kathy

[Crazycat]

Just got back. Great dinner, very nice people!
 That food you're preparing sounds very appetizing Laura!

About the neck-aches. They were constant during the course of my illness. I never had any headaches, only neck-aches (as strange as that may seem). They disappeared after my surgery. But then, that's just me. We all respond differently with symptoms and how we fare after treatment. Chances are though, the AN is the source of your neck pain. I say this only because I've heard others report the same symptom and not just because I've experienced it. It is interesting to note that, by the time I had my surgery and had been released from the hospital and had healed up in a month or two, I had forgotton entirely about the neck-aches because they had long since stopped. It wasn't until I began reading about other's experiences with them here on the forum that I remembered how much I suffered from them. If I reach back and press on those points at the rear skull base now, there is no pain whatsoever.

   Paul

[TP]

Hi, I had severe neck pain radiating down my arm and thought it was due to a martial arts injury. I saw a chiropractor, had massages, took lots of Aleve, nothing helped.  Finally saw a pain Dr. about 7 months later, had a neck MRI, they still didn't see my tumor (don't know how they missed it), several months later started losing my hearing and was getting headaches and my pain DR ordered a brain MRI. My tumor was on my brain stem pressing against my spine and reason for my neck pain. The great news is after my surgery I didn't have head aches and my neck pain disappeared.

I am not a prescription pill taker but after they diagnosed my tumor I asked for pain pills. I apologize I don't recall what kind but they helped me tremendously. I took them for about 3 weeks before my surgery. They did help a lot and after my tumor was removed I didn't have to take anything.

Hang in there, our prayers are with you!